Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Wednesday, January 16, 2013

New Plan

Emily wearing her wig that she put n the other night.
It's been awhile since I have updated but really more because we have been trying to wrap our head around everything that is happening and information we have been told. We still haven't wrapped our heads around anything.

We met with Dr Gowda on Friday afternoon of last week and talked over a trial that he thought may benefit Emily! It's a trial that is done at Sloan Ketterling however we are going to do the trial here at the home hospital, and do scans in Michigan. The trial consists of 3 different drugs with Day 1 and Day 15 of Avastin. Day 4-9 will include irinotecan and temolazide Avastin is done at the clinic and the other two are done at home! Emily will have 2 rounds of this regimen and then head back to Michigan for scans. If the scans show improvement, then Emily will move into 4 more rounds of just the irinotecan and temolazide.

When talking with Dr Gowda he really put some harsh reality into play for us. The harsh reality is when Dr Gowda said, "something you all really to need think about is that if the scans show no change, to think about giving Emily a good quality of life and stop treatment!" It's not what we expected to hear, but after 2 years of trying many different Chemos, antibodies, radiation, MIBG therapy and nothing is working. So after two rounds of chemo regimen have scans, and no change we really need to think about things!

Fuck we hate cancer, but we hate neuroblastoma even more. This put a hole in our heart and has really been pretty devastating. We want Emily here longer than we are and see her doing all those things that she should be doing!! we want her to celebrate her 6th, 7th, 8th and so on birthdays and be here for Christmas for years to come. For someone to make it real and smack you in the face that you need to give this up, really breaks you apart. When Dr Gowda said this I felt my heart drop to the floor and Doug just look at me and look at him. Ok pick your heart back up, baby girl can fight this. She has always been a fighter, and always does it with her amazing smiles and dimples that you just want to pinch her face and love her like there is no tomorrow! I've become pretty quiet as I call it in my own world and been in a hole trying to wrap my head around what is really happening here while at the same time trying to move forward with life and everything going on around it... Doug is really messed up about all of this too, trying to recover and find hisself again. But Its scary and It's a harsh reality, harsh reality that breaks a parent into pieces and brings you to the floor hurting and crying. Wheres the rock you want go throw and break something! I honestly never knew what my heart hurts meant until this. My heart hurts and I know that Doug's is hurting too. There was something that I recalled today in my thinking ( we do this a lot lately) but at the beginning someone told us "this gets easier with time," I wish I remember who told us that because I would really go back and tell them they have no idea, because this has not gotten easier , actually it's gotten worse and harder. The decisions are beyond painful and hard to make. I can still recall when the first chemo was being hung, I couldn't stop the tears...the tears today are much deeper and more painful. I remember the first day of radiation and having to walk out of that after laying her on the hard table and seeing the laser beams on my daughters body, and crying. The tears today are still much more painful. I recall MIBG therapy and crying because she was crying because all she wanted was her mom or her dad and couldn't because of the radiation in her body. The tears today are much more painful. Starting nifurtimox with chemo and hoping with all my heart that the treatment would work and the highs and lows of it. Again much more painful knowing today we are not looking for a cure and it could become a possibility that we are not even looking to keep is stable, but to allow her to have a good quality of life.

Anyway, Tomorrow will be day 1, however a CBC has to be done first and if her platelets aren't at a level he is comfortable with he may ask that Emily not use the Avastin at this time, because it could be hard on her platelets to recover. Last Wednesday Emily's platelets were 47 and for this trial you need to have 35. Dr Gowda feels her platelets need to be at a comfortable amount. If CBC shows platelets are still recovering Emily will start Avastin tomorrow marking day 1. Monday will be day 4 and at home Emily will start the two Chemos again i said at home. They will go over how these need to be taken and timing and all. We've had to make calls to get these drugs at home and not many places cover them, and when I finally found one, he came back with a crazy high price, however it was the price. Our awesome nurse was able to get one of them through the oncology clinic for almost 70% price cheaper, but not the other one, so we are really thankful for at least one of them being cheaper and paying a huge out of pocket expense is not as much, but still expensive. Thank you Elaine (Emily's nurse since she was diagnosed) for all the hard work you do. She will go back for count checks probably once a week for this 21 day course regimen and day 15 go back to clinic to get the second Avastin.

I need to end this because it's bringing me to tears which have been a many lately just thinking about everything. But on a happy note, Emily is still doing amazing. She is so full of life and even went to school today, although we fear the flu outbreak right now and all the germs. (Never thought I would be a germophobe, but the germs right now are horrible.) The picture attached is of Emily putting her wig on the other night.

I ask that you all make sure you hug and kiss your kids every night and tell them how much you love them. Please always tell them how much you love them.


  1. hi
    i am just wondering if you are open to suggestions for some stuff i have heard amazing things about, no drugs just all natural and works with chemo drugs so you can go that way too? im no salesmen just a mom of 4 beautiful kids and i hate cancer! my heart is breaking after reading what you just wrote and i wanted to just ask. ive Im sorry if ive steped out of my place i just watch some of these babies leave to soon and feel bad i never emailed there parents and told them of the stuff i have found. im not even sure some of it can work for emily but i can just send u what i have found and let you go from there anyway my email is mykidsarecrazy3@yahoo.com
    ps please dont reply to the google email i never check it or use it i only have it cause i have to have a gmail for my android phone so my sister picked a stupid name for me LOL

  2. Dearest Shannon,
    I understand the heart-hurting pain. I only *wish* it got easier as time goes on, but whomever coined that term should be given a swift kick in the balls, and more. It's all too fresh how I remember the Dr. telling us the same things as you've been told regarding giving your beloved a quality life. I wish I had the words to say that would take all the pain away, take all the fear away, take all the drugs and cancer away, but I don't. Only God has those answers. As hard as I know it is to trust in Him, especially right now, that is exactly what He wants you to do. I'll get back to that....

    Right now, trust yourself, trust your choices, and trust your Faith. All that you've seen, all that you've been through, and all that Emily has seen, experienced and been through is (as horrible reality as it is) is exactly as God has planned. I know, I hate thinking that, especially with a child. Why in the world would God plan for my child to suffer so?! I wish there was a humane answer, but there isn't. I asked the same thing regarding my husband. It's NOT FAIR. It's NOT RIGHT. I say this just to let you know that it's ok, and I understand. I empathize. You're not alone.

    Over all, have Faith in God. Ask him to carry the heavy burden you and Doug and Emily and your other children are carrying. Each of your burdens are a little different. Regardless, you cannot, and God does not expect you to, carry it alone. Give it all to Him. Truthfully. Fully. He will hold you. He will hold Emily. This, I pray.

    It took me a long time, and it's been 23.5 months since Tom's death to fully give it all to God. Through hours of counseling, spiritual therapy, and self-reflection, I realized my grief of losing Tom actually began long before his actual death. All of what we went through was to prepare me for his time to be called upon by God. As horrible as the truth is, I've come to terms with the fact that our time on Earth, for each of us is limited. Still, it is not something we can, or are supposed to, humanly really understand or even say "ok" to. Because we are human. And that's how God made us. He doesn't expect us to be all knowing, because we aren't. Only He is. I know, it still doesn't help. It still doesn't take away the pain, or the terrifying thoughts of our beloved to not see there X number birthday. This Feb 1st, Tom would have turned 41. Nathan (who just turned 4) and I will go put balloons on his memorial site. But it's still not the same. Every night after bedtime prayers, we talk about his Daddy in heaven. Every night I answer questions that come from my 4 year old's mouth, that I never thought he would even fathom at this young age. I answer to the best of my knowledge to the best of his understanding. It's hard. It sucks. It's not fair.

    I've gotten way off. Regardless, through all of this, I want you to know that your pain is not alone. Your thoughts and feelings are heard, and appreciated. You all are loved by many.

    You have my heart, Love, and Light,

  3. Sweet Emily and Family I will have Continued prayers for you all, I Pray the Lord gives Emily Strength and a Long happy Life. I pray this New treatment be the Miracle for her, We Love you and are here, we will NEGU on Emily and Will be by your side in love and Prayer!! Stay Strong Sweet Princess <3 Praying with Angels in my Pockets to watch over you and keep you Stong!!!

  4. My heart hurts for Emily, you, and your family. You are all in my thoughts. Emily you look absolutely beautiful in your picture!


  5. Man! What can I say to help ease this pain? I don't have words to comfort you, how could anyone have words to comfort the heart of a mom who finds out news like this? So I will just tell you, I am crying with you and praying and praying that Father's will for Emily will be healing here on earth.

    Praying and praying,

  6. Someone name Diane E. left a note on the FB page A Cowboy's Hope for a Cure asking for prayers for Emily. It's been awhile since I've checked up on Emily. Please forgive me, but I have so many other children that come through that are new and I just don't have the time to get back to the children I've featured on my wall previously.

    There is no question that Emily does need prayers. She is facing tremendous odds here; well, actually she is facing the last odds and it breaks my heart to even know this. Once these children are featured on my wall, the become "my kids". Not just to me, but to everyone who follows the page. Emily will be featured again today and I will be asking for a vigil for her. I'll ask for a prayer chain so that prayers for her will never stop.

    It would also seem that mama and daddy are in need of prayers too. You need as much strength as possible in your time of desperation. You should know that the Lord hears your pleas and cries. He is with you always. He is also with Emily at all times.

    May God bless you all, especially Emily, and may he heal her and you. Peace be with you.

    Robt., aka Boss

  7. I was very disheartened to find no comments here, so I typed out a number of paragraphs almost as long as your blog above. Then, I had to sign in using my own blogger name. When I came back, all my typing was gone. Now I understand why there are no comments.

    In short, this is what I said:

    Someone named Diane E. posted on my FB wall "A Cowboy's Hope for a Cure" that Emily is in need of prayers. Indeed she is and she'll be featured on my wall once again so that everyone can pray for her. We'll also be praying for the family. God bless and heal each of you.

    Robt., aka, Boss

  8. Devastated,crying....I hate neuroblastoma! Love Emily,that's such a cute pic. Praying this new regimen will come with amazing results. :x

  9. Girl all I can say right now is that I love you and that I really am sending the prayers up. I want so badly for this nightmare to be over you and your family I really, really do. God Bless Emily and God bless your family.

  10. I love you and I pray that your families nightmare will be over. I want you to have your baby/babies (healthy, happy, & safe) for the rest of your life. God Bless you all. I'm praying...really praying